Telling medical professionals that I am autistic is always really hard for me. Because I am so used to passing, it is something that not a lot of people would suspect about me and it is also something that some people downright disbelieve.
I started physical therapy for a running injury at the end of June and I was nervous about telling my physical therapist, but it seemed important to do so because the way I feel pain and sensation is directly related to my being autistic. I was super relieved when I told him and he said, “I wouldn’t have guessed that,” but then respectfully listened to my sensory perceptions. I was really happy.
Then that PT left for a different practice and I was transferred to a different PT and I was nervous all over again, but I told her and not only was she very respectful about it, she asked a lot of questions and seems to have kept it in mind in terms of her treatment.
Then I had an injury that required me to go see an orthopedist (or, as my sister likes to call them, an orthopod) and because I mostly wanted to (a) make sure I didn’t have a dire injury and (b) get a cortisone shot, I didn’t bother mentioning my autism because (1) it didn’t seem important and (2) I didn’t really want to dive into that particular minefield this morning, especially considering going to doctors is hard enough for a plethora of reasons.
But then he looked at my paperwork, which includes my place of employment and was all, “The Autistic Self Advocacy Network? I’ve never heard of them,” so I gave him my elevator speech about ASAN, including the information that I am autistic and he said…
“If you are autistic, you are very high functioning. I have a nephew who [does this negative thing and then these other negative things].”
*all the sads*
I don’t have a script to reply to that although I really should get one. If I’m autistic? Very high functioning with the implicit dismissal of my struggles and accommodations? A nephew whose frustrated actions are either this man’s vision of him or a conversational weapon to disprove me being autistic enough?
Fortunately that conversation was at the very end of the appointment because all of the emotions that hit me as I walked back to my car were crushing.
I was hurt by his flippant dismissal of me—really hurt.
I was upset that his reaction to my autism was to provide a counterpoint of “there are so many who are really affected.”
I was saddened that his nephew is having a hard time.
I resented the power differential that forces me to be deferential regarding my own lived experience with him because he is in charge of my medical care.
This isn’t the first time this has happened to me. I hear this type of response all. the. time. This isn’t even the first time this has happened to me with a medical professional in the two and half years I’ve worked for ASAN. And I don’t go to doctors all that often.
To be clear, I know that there are many autistic people with many more support needs than me. I absolutely understand that I don’t understand fully what they are going through. I also know that I have a lot of things in common with them that may not be apparent to people who don’t know me well.
I just hate being so dismissed from my very real experience of autism because a doctor who has spent ten minutes with me has a different vision.
I walk through this minefield all the time.
Every time I tell someone I’m autistic I wait to see whether I will get hit with shrapnel. I have been lucky with a lot of people—and with the most important people, but that doesn’t make the explosion hurt any less when it does happen. Even small landmines are landmines.